Tuesday, 26 May 2015

Tomorrow Speaking Nairn Community and ARTS center

With great thanks to Jonathan Clark ,Carolton Care ,and the the Club House hotel for the kind invite to speak 
Nairn Community and ARTS center May 29th   

I was  A guest speaker a few weeks  back for Heather Edwards at a Care Inspectorate event that Jonathan attended and hew has since been in touch to organise this open event ,thank you also to Wendy Burghes who is helping promote this talk across the area 

this is a free event to attend ,so a big thank you to all for organizing and I hope you might pop along and say hello  if you live near in or around Nairn 


Thanks for reading my blog, You can now view my 8 short flims here! http://tommy-on-tour-2011.blogspot.co.uk/2014/05/my-mums-name-was-joan-this-is-our-story.html
DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg

Tuesday, 19 May 2015

Guest Post - My Mum by Suzy Webster


would like to say a huge thank you to my kind friend Suzy Webster for this insight into her Mum’s life and the loving relationships she enjoys with her family. Suzy has spoken of her experiences in order to raise awareness of dementia, and what this means for people and families. She also works at Age Cymru, and so does a huge amount of work to make a positive difference in the lives of older people in Wales. You can keep up with her latest activity by following her on twitter @suzysopenheart

We are privileged to share Suzy’s story as part of Dementia Awareness Week in England and Wales. Thanks again to Suzy for sharing her story and for all the work she does to increase people’s understanding of dementia.

  My Mum ,by Suzy Webster 


My Mum lives with me, my Dad, husband and two children aged 6 and 9 years. She also lives with dementia.

Mum and Dad came to live with us in South Wales just after Mum was formally diagnosed, 3 years ago – there is one thing certain about dementia, it isn’t going to get better so we knew planning for the future was essential and taking a team approach to caring for Mum meant we could support each other. Mum had been ill for a long time but I suppose, like us, medics hadn’t considered a dementia in someone so young. Looking back I remember the first signs of Mum’s memory loss when she was in her mid 50’s.

“Mum is and will always remain a valued part of our family.”

At the age of 68 now, life has its challenges for Mum. We provide 24 hour care for her. Her mobility is very limited, her short term memory has gone and she is unable to access the local community alone. This is outweighed by our evolving relationships, Mum is and will always remain a valued part of our family. She is loving Mum, she holds me closer than ever before. She takes great joy in being with her grandchildren, reading stories together and having girlie nights! I have learnt so much from my children, they see Mum in the moment. When I miss how Mum used to be and when I fear for what the future may hold, I watch my children be with Mum and it brings me back to the here and now, I am grateful for this opportunity to care for someone who cared for me.

“I am grateful for this opportunity to care for someone who cared for me.”

Loving someone with dementia has its challenges too; we really struggle with the lack of joined up care. Mum has about 7 or 8 health, social care and third sector professionals involved in her care. We don’t know them and they certainly don’t know us as a family, they pop in and out of our lives. We always try to involve Mum in her care planning, but as her cognitive abilities decline we have to adapt to how much information she can digest. That is what I am learning anyway.  I have been in appointments with Mum where the professional will only talk to Mum (because she is the client) appointments when Mum’s other health conditions are not considered and appointments where professionals speak loudly and slowly at Mum, I have also been in appointments where Mum is bombarded with information she just can’t understand.

“I have been told “We know about dementia patients” My answer to that? You know nothing about my Mum!”


At her cataract operation recently Mum was told “During operation, if you want the consultant to stop, just raise your hand.” I said to the nurse, “My Mum won’t remember that – or anything else she’s been told because her dementia means her short term memory is affected. But the nurse said “I know that but I have to tell her anyway.” This felt like she was just ticking the box which said she had informed the patient. When trying to inform professionals about Mum’s needs, I have been told “We know about dementia patients” My answer to that? You know nothing about my Mum! Carers are experts in their loved ones care; professionals may see a bolshie daughter, an angry son, a grieving husband or a distressed wife in the same way a patient who is fearful may appear aggressive but there will be a reason behind the behaviour. We need support, kindness, a listening ear. We need you but if you are caring for our loved one, you need us too.

Suzy Webster @suzysopenheart

Monday, 18 May 2015

Guest Post Via Chris Roberts - Making Memories and The ADI Conference

A very warm welcome back  to my kind and wonderful friend  Chris Roberts, who has written some fantastic blogs for us before which you can read here. In this post, he tells us about his travels to Australia to attend the Alzheimer’s Disease International Conference, sharing his insights and the memories made in the process.

This week marks Dementia Awareness Week in England and Wales. You can find out more about this awareness week and what you can do to get involved on the Alzheimer’s Society website here

Thanks again to Chris, we’re so pleased to be able to share an update on the wonderful work he’s doing, raising awareness all year round.

One important thing about having dementia is making memories !

Which we definitely did in May of this year, we travelled half way across the world to visit Australia and the Alzheimer’s Disease International Conference, 2015 in Perth with my wife and daughter.

One of the outstanding things about this conference that sets it apart from other international conferences was the attendance of people with a Diagnosis of a dementia, nearly 10% ! 81 delegates with a diagnosis ! 15 of them were speakers, including myself, I was representing The Alzheimer’s Society UK, the UK’s leading and largest Charity, who I have to thank for the help with funding to attend this very important conference, and Dementia Alliance International, an International group comprising exclusively of people with dementia, who advocate and provide services for people with dementia.

Dementia Alliance International has recently partnered with Alzheimer’s Disease International.

Nearly 50 countries were represented at the conference over a period of three days and  the same number of presentations were heard, these comprised of ;

The ‘lived experience’
The importance of song, music and dance
Employment regarding dementia
Disability and human rights
Dementia friendly communities
And much more.

1I met some virtual friends from social media, such as Kate Swaffer and her husband Pete, Truthful Kindness and her husband Guy, Lynda Henderson and her partner Veda, Mick Carmody and his wife Sue, John Sandblom and Colin McDonnell along with lots of others. It was great to see my friend and fellow dementia advocate Helga Rohera again, she’s the chair of the Europe working Group.


I had the great pleasure of finally meeting the CEO Of ADI, Marc Wortman, who was very helpful through the whole process of submitting an abstract to finally presenting in his workshop there.2


One of the workshops we attended was about importance of supporting children of parents with Younger Onset Dementia. Where they spoke about kids as young as 10 years of age being affected by the disease, don’t forget that when a diagnosis of dementia is given, it’s given to the whole family as a unit and even affects friends.

My daughter, who at 17 years old, was the youngest delegate there had a few things to say about this herself !


A very successful conference in all, we heard and learnt a lot!

We then left there and stayed with Kate Swaffer in Adelaide at her home, where we recovered as was very tired after the conference. The highlight of our visit to Adelaide was a trip to the local park to see and pet kangaroo’s and where my daughter held a koala! A fantastic day !

From there we travelled across country to Sydney accompanied by Kate Swaffer and5

our good friend Dr.Shibley Rahman, where we met up with Lynda and Veda, more friends from social media ! We had a couple of days out and some fabulous meals in the evening, they were all great company and some lovely memories were made again !





We then took a plane to Ayers Rock, stayed in a beautiful complex near to the rock its self. We went out to the rock to watch the colour changes at sunset and had a meal out in the desert !

You can’t put a price on memories and who says your life is over once you have a diagnosis, I may have dementia but it certainly does not have me….. Yet

Chris Roberts

Friday, 15 May 2015

Busy Week 7 talks 5 days London Huntington Stafford Blackpool #DementiaAwerenessWeek


Dementia Awareness Week 2015  ( England ) is here and I have a very busy week lined up 
A massive thank you to all who have invited me along as part of our Make A Difference tour across the Country 

More than 3800 People have made a personal pledge to date on our tour and campaign and i will be sgharing the pledges as we go along to each talk 

Monday and Tuesday I have three talks across Bart's NHS Trust after the last talk there I head off to Huntington For 2 talks  Hinchingbrooke on Wednesday 

Thursday I will be at County Hospital Stafford and then final
talk of the week is at Blackpool Hospital

A big thank you to all for the kind invites and support, you can get more detail for at talk by clicking om the links at each above    

Thank you 


Thanks for reading my blog, You can now view my 8 short flims here! http://tommy-on-tour-2011.blogspot.co.uk/2014/05/my-mums-name-was-joan-this-is-our-story.html
DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg

Wednesday, 13 May 2015

Speaking Blackpool Hospitals Care and Compassion Conference May 22nd



With great thanks to Tracey Burrell assistant director of nursing and Alison Verrall Blackpool Hospitals education and teachings trust for the kind invite to speak at the Care & Compassion Day they are having on May 22nd 

I would also like to say a big thank you to my friend Paul Jebb @Pauljebb1 experience of care professional lead NHS England for the kind introduction and for nomination to speak 

I have also be invited and really looking forward to a tour of the hospital and meeting the dementia champions based there 

I am very housed to be speaking and look forward to attending and meeting everyone 


“This day is to celebrate International Nurses Day.  The occasion has been honoured by nurses since 1965 on May 12 — the anniversary of the birth of Florence Nightingale, who is hailed as the founder of modern nursing.  The Trust uses this day as a great opportunity to highlight the important role all nursing and allied health professional teams play in patient care and to share an extra special thank you to our nursing staff for the work they do.”



Speaking Stafford County Hospital May 21st


Speaking Stafford County Hospital May 21st 


With great thanks to  Samantha Buxton, Dementia Liaison - SSSFT County Hospital, Stafford
For the kind invite to speak at the hospital on May 21st h in the lecture theater 

There will be  information stands from local dementia and carer support groups which will be  open from 1pm – 5pm.

I am very honored to be invited to speak and look forward to meeting everyone ,learning and listening 

Thank you Samantha and all the team at  County Hospital, Stafford for the kind opportunity 



Tuesday speaking Education Centre, Lecture Room at Borders GeneralHospital


With Great thanks to David Thomson associate director of nursing NHS Borders for the kind invite to speak Education Centre, Lecture Room at Borders General Hospital on Tuesday at the NHS Borders governance event at 2pm 

I am very honored to be invited to speak about our make a difference campaign along with others from the Borders who will be speaking about local issues 

A big thank you also to Amy for help arrange 


Thanks for reading my blog, You can now view my 8 short flims here! http://tommy-on-tour-2011.blogspot.co.uk/2014/05/my-mums-name-was-joan-this-is-our-story.html
DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg

Monday, 11 May 2015

Tomorrow Speaking The Royal Wolverhampton Hospital #IND2015


with great thanks to Katie Haywood Practice Education Facilitator Nurse Education The Royal Wolverhampton Hospital for the kind invite to speak at the hospitals  international nurses day on Tuesday 12th May.

I am very honored to be invited to speak at this celebration of nursing event as part of my 'You Can Make A Difference ' tour 

 Thanks for reading my blog, You can now view my 8 short flims here! http://tommy-on-tour-2011.blogspot.co.uk/2014/05/my-mums-name-was-joan-this-is-our-story.html
DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg

Friday, 8 May 2015

Dementia Carer Voices May Newsletter is available to read here


Our Dementia Carer Voices May Newsletter is now available to read and download at the link here Read: Dementia Carer Voices April/May Newsletter

Welcome to the latest edition of the Dementia Carer Voices Project's newsletter, which will keep you up to date with our latest activity.

This month's edition includes details of our Charity of the Year award, an update on the Carers Bill and the launch of our report on our caring survey, along with some great guest contributions to our Dementia Carer Voices blog site.

Read: Dementia Carer Voices April/May Newsletter


Thursday, 7 May 2015

Carers Bill Update: Guest Viewpoint from Andrew Strong, Policy and Information Manager at the ALLIANCE

We would like to thank Andrew Strong, Policy and Information Manager, at the Health and Social Care Alliance Scotland (the ALLIANCE) for his contribution today. Andrew presented evidence on the Carers Bill proposals to the Health and Sport Committee on behalf of the ALLIANCE, which used information from the survey where 160 of you told us what was important to you and what needed to be improved upon to help make the caring experience more manageable.

Here, he shares an update on the meeting and the next steps for helping to ensure that carers get better support in the future.

What needs to change to make a positive difference in the lives of carers across Scotland?  More information and advice? Better services? Greater understanding of what it’s like to be a carer?
The recent carers survey results, compiled by the ALLIANCE’s Dementia Carer Voices project over an eighteen month period and analysed by experts from Glasgow University, highlight that all of these are priority areas which we need to make sure that carers see progress on immediately.

The publication of carers views was timely – coinciding as it did with the new Carers (Scotland) Bill and the invitation of third sector organisations, including the ALLIANCE, to provide evidence to the Health and Sport Committee on its contents on Tuesday 5 May. 

I joined colleagues from Carers Scotland, Carers Trust (Scotland), the Coalition of Carers in Scotland and others in welcoming the Bill’s recognition that, to date, the support available to carers hasn’t been enough.  In my view, a Bill sitting before Parliament which is attempting to address some of this is a credit to the campaigning efforts of many, many carers across the country who have rightly been saying so for years.
Despite this however, we are left with a number of unanswered questions:

  • What do we mean when we say support for carers? Respite isn’t enough – carers need adequate access to other types of assistance such as advocacy.
  • Who will be eligible for support and how will we make sure that in one local authority you can expect a comparable level of support as the next?
  • How will charities be properly funded to make sure they can continue to support carers?

Alongside this there are is one area where specific provision is, in my view, required urgently – emergency and future planning.  Since I started working with and for carers in 2006, I have met many who are worried about what will happen if they are suddenly unable to care – a role which, in some cases, they have undertaken for fifty years or more.  At the ALLIANCE, we have joined ENABLE Scotland in expressing our view that much more needs to be done to recognise this concern, and give people peace of mind for the future.  The starting point for that would be the inclusion of emergency and future planning as part of the new adult carers support plan process.

So where does that leave us?  The Health and Sport Committee will be convening more evidence sessions in the coming weeks – including with statutory agencies who will now have a duty placed on them to support carers.  I would encourage everyone to make their views known to their local MSP, as I know many already do.  Your voice is vital in making sure carers get better support in the future.

Andrew Strong, Policy and Information Manager, Health and Social Care Alliance Scotland (the ALLIANCE) 

 YouTube: Health and Sport Committee evidence session on the Carers (Scotland) Bill, 5 May 2015

Scottish Parliament: Transcript from the Health and Sport Committee evidence session on the Carers (Scotland) Bill, 5 May 2015

2 Talks Hinchingbrooke Hospital May 20th


2 Talks Hinchingbrooke Hospital May 20th  

With great thanks to Angela Moore @lamplight58 older people specialist Nurse and Deirdre Fowler @DeirdreFowler13 Director of nursing and midwifery  and Caroline White    Hinchingbrooke Hospital for the kind invite to speak at their dementia awareness week event at the hospital on May 20th 

There will be morning and afternoon event with speakers and information stands please see  agenda below , I am very honored to be speaking at both 

Looking forward to meeting everyone ,Learning and speaking 

Thank you Angela ,Deirdre and all at the trust for the kind invite 




Wednesday, 6 May 2015

Thursday Speaking at Celebrating Florence Nightingale conference Hertfordshire NHS Trust May


With great thanks to Carolyn Fowler Assistant Director of Nursing, Education and Research East & North Hertfordshire NHS Trust for the kind invite to speak at the ' Celebrating Florence Nightingale conference on the 14th of May 

I had the great honor to speak to nursing students for Carolyn last year and I am very honored to be invited back to speak at the conference 

Below is a draft agenda for the day with some speakers to be finalized 


Key note speakers
• Jane Cummings 
– Chief Nurse, NHS England
• Dr. Peter Carter OBE
General Secretary, RCN
• Tommy Whitelaw, dementia carer
(British Citizen Award 2015) 

                                    For further information or to book your FREE place, please contact:

For any administration queries call 01707 285984

Hertfordshire Partnership University NHS Foundation Trust Hertfordshire Community NHS Trust – East and North HertfordshireNHS Trust  West Hertfordshire Hospitals NHS Trust 

Sponsored by Bedfordshire and Hertfordshire Workforce Partnership

Guest Post - Gemma Powell Getting it Right for Young Carers (GIRFEC)


with great thanks to Gemma Powell for this guest post. To learn more about GIRFEC you can contact her on gemma.powell@alliance-scotland.org.uk

Getting it Right for Young Carers

Caring for a relative or close family friend can be a rewarding and joyful experience for many of those who do so but it can also carry a great deal of added responsibility and difficulty. Young Carers may be  denied certain rights of the UNCRC such as the right to spend time with friends (Article 15), to be protected from discrimination (Article 2) and the right to education (Article 28 and 29).

Getting it Right For Every Child (GIRFEC) is a new way of working in Scotland, underpinned by the UNCRC, for all professionals who work with children and young people and this includes young carers. The Children and Young People Scotland Act (2014) introduces the Named Person Service which allocates a Named Person to every child in Scotland from birth to 18 (with a few exceptions). This named person is known to the child and family and is there to support them as and when required.  This service gives a point of contact for anyone who has any concerns about a child’s wellbeing – including the child and family.

The Act also places a rounded definition of wellbeing into legislation which encompasses all aspects of a child’s wellbeing using 8 indicators (Safe, Healthy, Active, Nurtured, Achieving, Responsible, Respected and Included). For young carers whose wellbeing may be comprised by their caring role, it will be beneficial to have someone they can go to, to have their overall wellbeing assessed and the right help put in in place to support their wellbeing while enabling them to enjoy their time with their relative.

The Getting to Know GIRFEC Project has been running seminars all over Scotland to inform children and young people, parents and carers about GIRFEC and what it means to them. By giving them an understanding of GIRFEC it places young people and families on an equal footing to be able to participate in meetings and decisions around the child or young peerson. There are numerous resources available on the project website which have been designed to explain GIRFEC in a variety of ways including plain English booklets, videos, easy-read documents and easy to use activities to improve understanding.

The aim of GIRFEC is to make Scotland the best place in the world to grow up. To achieve this collaboration is key between everyone involved in children’s lives – parents, the wider family, the child, the school, healthcare providers, the police or any other statutory bodies or third sector organisations. We need to work together. Only then can we ensure we are doing the best for the child in question in as many aspects of their wellbeing as we can, as early as we can. Communication between organisations and individuals, and their commitment to make this work will be key to the success of GIRFEC. And it really is something worth making a success of.


Thanks for reading my blog, You can now view my 8 short flims here! http://tommy-on-tour-2011.blogspot.co.uk/2014/05/my-mums-name-was-joan-this-is-our-story.html
DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg

Friday, 1 May 2015

- Health Innovation Conference 11th - 12 March 2016, Carlisle,Cumbria


With great thanks to Gareth Presch @GarethPresch for taking time to write about the inspiring Health Innovation Conference 11th - 12 March 2016, Carlisle, Cumbria he is currently working on 
I have been watching the insprirng conversations on Twitter about the event and I am grateful to Gareth for taking time to share his thoughts and ideas ,I have personally held the date in my diary and hope you might too.You can follow Gareth on Twitter for more details and progress @GarethPresch


Opportunity Knocks!  The ‘time for change’ is what sprang to mind last Thursday when we realised that patients, clinicians and managers have the chance to come together to improve quality patient care as a community. Conversations with like-minded peers on Twitter were the inspiration for this exciting initiative. I’ve always been patient focused, but the community spirit is something new to me, if I’m honest. My understanding of the importance of community collaboration stems from a meeting I attended in Manchester a few months ago. Dr Amir Hannan invited me to attend a meeting about collaboration within the community that delivers positive change http://www.htmc.co.uk/pages/pv.asp?p=htmc602 . What we witnessed that day has inspired me to embrace community collaboration to deliver quality patient care in health and social care.


We’ve adopted Cumbria as my home, being originally from Dublin, and we want to share this region with everyone to show how inspiring it can be. I’ve recently joined Carlisle Ambassadors and their vision is to promote the local community in Carlisle to make it a better place to live and work – this ideology is exactly what we hope will spread as result of this conference. We aim to bring people together to share knowledge and life experiences so we can deliver for our community, in the areas of disability, children, adolescents and beyond. How we use I.T and social media will become important support tools, and I hope this is an area we can develop at the conference. If we are successful we will not only change things for today, but for tomorrow and generations to come. 


Everyone is invited who has an interest in improving quality patient care through innovation and working together, including patients, clinicians, managers, businesses and the public. This event is about supporting each other to improve our health and wellbeing by being innovative. The support has been incredible and it is a credit to everyone who has shown an interest in the event – this gives us hope as it shows people pulling together, using their own time and resources for the common good. We will bring together a group of people determined to make positive changes. This is something we’re passionate about – we know, together, we can do this and we can deliver.

We hope to create an environment that encourages questions and although we may not find all the answers we’ll have started to change things for the greater good. We have some fantastic people who have life experiences and delivered throughout their career willing to come and share their knowledge, so we can learn from them in order to improve health and social care in our communities  – and we hope they too can learn from others attending. 


Our aspiration is that we can bring innovation to the Great Border City, so I say “Be Just and Fear Not”.

Together we Inspire



If you would like to get involved please email healthinnovationcarlisle2016@gmail.com or contact us directly via Twitter @HIC2016 @garethpresch #worldhealthinnovationsummit

Together we can inspire sustainable quality health care that benefits the wider community. We look forward to seeing you in Carlisle, 11th/12th March 2016 (venue TBC)


My mums name was Joan ,my Mum Had Dementia - our Story 9 Short Films

Tommy’s speech, providing a carer’s perspective,  on the theme of “ No – one ever asked   ” highlighted the transformational impact that ...